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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Search results

  1. Q

    All hope is lost

    Thank you. I am truly sorry that I came across so negatively. I guess I was hitting out in all directions. I have suffered for over ten thousand days. I genuinely believe that if this illness had been taken seriously many decades ago, no-one would be suffering right now. There are reasons...
  2. Q

    All hope is lost

    At least it is for me. This study, eight years in the making kept me going. I wish they hadn't published this junk, at least then my hope might have held on a little longer. There is so much I want to say about Abi Nath and Wallit but if I did I would be banned from social media. Suffice to say...
  3. Q

    Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome

    Is this what we waited eight years for ? For this pile of crap ?
  4. Q

    Will we ever get an apology ?

    I know that an apology is not what we all really want. But will the NIH ever say sorry to us ? Will the GP that said I was suffering from hysterical overload ever say sorry ? All those that said this illness was in my head, not real, a way to escape from the world around me. I am suffering right...
  5. Q

    Why don't they ask the right questions ?

    Brightcandle - your sentiments are shared by so many of us, especially those like myself that have been ill for almost 29 years. It is an absolute scandal that so many have been allowed to suffer for so long.
  6. Q

    Why don't they ask the right questions ?

    Re DecodeME, i wholly diagree. They placed a lot of emphasis on the fact that initial results would be published much earlier than the August 2024 deadline for completing the study, I have had lengthy conversations over the phone and they were clear in telling me there had been a delay with the...
  7. Q

    Why don't they ask the right questions ?

    DecodeME is supposed to wrap up their trial in August 2024 - I'm calling it now, no chance. Why don't they tell us why ? Believe me, I have rang them, I have emailed them. Why have the results of the initial samples not been released as first promised ? Why another questionnaire ? Why is the...
  8. Q

    Something exciting is coming in November

    How very sad.
  9. Q

    Whitney's Birthday Fundraiser

    I'm sorry but this doesn't fill me with hope, only despair. I feel his pain. I feel it because it hasn't left my side for almost thirty years. I wish Whitney nothing but love, and hope that if help ever comes our way, he's amongst the first in the queue.
  10. Q

    Something exciting is coming in November

    I don't think I can take another ''research project''. If that's where we're at I can say goodbye to hope. In 2016 the NIH launched the biggest study ever into this disease. They still haven't published the results. Given that the OMF always ask for funding in November, I guess that's that. I...
  11. Q

    Something exciting is coming in November

    Hi MonkeyMan, I very much feel the same. For me this really is the last chance saloon with the OMF. I don't like feeling this way, but after several years, of something in the blood, metabolic traps, et al, I am almost finished. It's not that I don't trust them, I do, but the road is coming to...
  12. Q

    Something exciting is coming in November

    "We're bubbling with excitement and are almost ready to share some big news. It’s something that will take a big step forward in our mission to end ME/CFS and Long COVID. We can't say what it is yet, but you’ll want to be the first to know. Stay tuned as we will announce it on November 1! "...
  13. Q

    Do we need a miracle ?

    Where are the OMF ? They have been so quiet these last two years. We have DecodeME. Preliminary results of the first five thousand samples were supposed to be out at this point - delayed due to ''external factors'' And then there's the big Avi Nath publication - The Godot files as they are to...
  14. Q

    Avi Nath says......

    Any they are accountable to no-one. They make a great living, no ? It would seem to me Avi Nath and Brian Wallitt, have no interest in helping patients. If they did they wouldn't sit on theses results. There is absolutely no reason why Avi Nath couldn't have issued a pre-print two years ago ...
  15. Q

    Avi Nath says......

    Avi Nath identified ''for the first time, consistent biological abnormalities'' I believe he's known about this for over two years, probably longer. He could have shared that information with other scientists around the world. But he chose not you. Why ? It is obscenely cruel to keep that...
  16. Q

    Avi Nath says......

    ''We are looking at several treatment options'' I think that was said in early May 2022. What happened ? Imagine turning your PC off in October 2009 after XMRV was announced, and logging on to Phoenix Rising some 14 years later. I have to ask - what's changed ?
  17. Q

    Reply from the NIH

    "I just checked and they plan to submit the paper for review within the next month'' My bolding That right there sums up the NIH. For those of you that don't know, members of the NIH themselves said that the transcript was pretty much done and ready for submission, back in August 2022. They...
  18. Q

    NIH 5 year research centers

    So another five years, then as we now know, it takes the NIH another three years or more to publish their findings. Then another year for the journals to publish the results. That takes us to 2032, with no guarantee of anything. Where is the focus on drug trials ? Where is the help for those...
  19. Q

    Reply from the NIH

    Sorry, Dakota15, i forgot to say thank you for bringing this to our attention. Let's hope the news is important enough for the journals to publish this as quick as possible. Kind regards
  20. Q

    Reply from the NIH

    So, the transcript was ''almost completed in August' ( 2022 ) and they ( NIH ) had to look at it, what, for at least eight months ? What did they do, pass the manual from one member to another. I have a novel idea. Why not give the transcript to each member at the same time. Looks like it will...
  21. Q

    Reply from the NIH

    Brightcandle, you are absolutely right. The recent microbiome publication has hardly caused a ripple. And why ? Because we have heard it all before. There is a one minute video dating to December 2019 given by Lipkin. He said the results ( preliminary data relating to the NIH intramural study )...
  22. Q

    What now little man

    Thanks Lenora. I have to say that matters here in the UK are very different in terms of trying to find a doctor that will even listen to you, let alone prescribe anything, I think what I am hoping for from the NIH study are the data on the ''consistent biological markers'', to be released...
  23. Q

    Reply from the NIH

    I have read it several times - and still feel no further forward. That said, I do hope others are encouraged by this.
  24. Q

    Reply from the NIH

    Dear Mr. ********: We are responding to your email to the National Institute of Neurological Disorders and Stroke, a component of the National Institutes of Health (NIH), concerning myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). You asked if there is an update on the status of...
  25. Q

    What now little man

    I think this is one of the reasons why we need to know those ''consistent biological markers'' Avi Nath is saying he's found. I am so poorly I would take anything. But what if anything made me worse ? My life is hanging in the balance, and yet despite my desperate perambulations on here I think...
  26. Q

    What now little man

    He has ( Avi Nath ) said that these results will ''move the field forward in a big way''. ''This will help patients'' They are pretty big statements - statements he made nine months ago. How sure does he need to be ? I just don't understand the delay. If and when I receive a reply from the...
  27. Q

    What now little man

    I have managed to find an email for the NIH. I have emailed my concerns this morning. This study is huge. Avi Nath has described the findings as ''fascinating''. These results cannot be ignored. Why can't they be released so that others may begin to look at clinical trials using existing drugs...
  28. Q

    What now little man

    Almost six months since the ''Manuscript is almost finished'' There are many things I don't know, but I do know this :- They are comfortably detached from our suffering. They don't care, they really don't. I don't care what Avi Nath says. I know Brian Wallit thinks this illness is...
  29. Q

    Avi Nath

    Mark, I agree the delays in getting this study published are frustrating. We've repeatedly inquired about the time table for this study to be published and expressed its importance (there are other papers that can't be published until this one is). Sincerely, Ben I received the above reply...
  30. Q

    Avi Nath

    and the objective of this study - soon to be running into it's seventh year, wasn't to find the reason why we are so sick, but to identify future avenues for research. You couldn't make this crap up. Seven years to wait for this ? It feels like a game to these people. Do they not realise how...